Managing Refractory Symptoms in the Child with Severe Neurological Insult: The Role of the Pediatric Acute Care Nurse Practitioner

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Managing Refractory Symptoms in the Child with
Severe Neurological Insult The Role of the
Pediatric Acute Care Nurse Practitioner

• Maria Rugg, RN, MN, ACNP, CHPCN(c),
• Sherri Adams RN MSN CPNP
• The Hospital for Sick Children
• Toronto, Canada

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TORONTO
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Objectives

• Examine a framework to understand refractory
  symptoms in the pediatric patient at the end of
  life using problem based learning
• Describe the health care teams application and
  use of the framework within a tertiary/quaternary
  academic health care centre setting
• Describe a potential body of research to evaluate
  the role of the acute care nurse practitioner
  within this setting

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Case History

• 7 year old female previously well child had
  near drowning incident in while at camp
• Prolonged resuscitation on site
• Suffered severe neurological damage secondary to
  hypoxia
• Initially in PICU then transferred to General
  Pediatric Ward
• No CPR plan established team told in handover
  from ICU that the family did not wish to discuss
  this any further
• Primary caregiver Mother (parents separated),
  Father rarely visited

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Case History

• Childs Condition
• Severely neurologically impaired
• Vegetative state
• Non communicative, no suck or swallowing ability
• Dependent for all ADLs
• Severely opisthotonic, rigidity
• Constantly sweating, moaning
• Grimacing, repetitive facial movements
• Very disturbing for caregivers to observe

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Case History

• Initial Plan
• Form a relationship with the family
• Ongoing stabilization of patient
• Insert Gastrostomy Tube
• Manage perceived pain and symptoms
• Teach family care of child and counsel on
  prognosis
• Discharge child home or to an institution
  depending on familys needs and ability to do
  caregiving for child

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Case History

• Problems with initial plan
• Rigidity and opisthotonus was refractory to
  medical management
• Severe GERD, did not tolerate NG or NJ feeds
  (reflux/aspiration/pneumothorax)- consider - GJ
  or PICC
• No good scale to quantify pain in neurologically
  impaired children
• Tried to titrate medications for comfort a
  comfort level was not reached
• Mother shouldering family and making all care
  decisions

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Case Summary

• Severe neurologic injury
• Prognosis no improvement
• Quality of life perceived as poor by family and
  health care team
• Mother just wanted patient to be comfortable
• Multiple specialists/professionals involved
• Symptoms becoming unmanageable by traditional
  methods

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Framework For Symptom Management Dodd et. al.
(2001) JAN, 33(5) 668-676
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Framework For Symptom Management Dodd et. al.
(2001) JAN, 33(5) 668-676

• Assumptions of The Model
• Gold standard is self-report
• Do not have to experience symptom, just be at
  risk
• Nonverbal patients experience symptoms-caregiver
  report assumed accurate
• Management may be targeted at the individual,
  group, family or work environment
• Symptom Management is a dynamic process

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Framework for Symptom Management, Dodd et. al.
(2001) JAN, 33(5) 668-676
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Framework For Symptom Management

• Symptom Experience
• Perception-changes from the norm
• Response-physiological, psychological,
  sociocultural and behavioral
• Evaluation-judgments on severity, cause, treat
  ability and effect on lives

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Framework for Symptom Management, Dodd et. al.
(2001) JAN, 33(5) 668-676
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Framework For Symptom Management

• Symptom Management Strategies
• Patient
• Family
• Healthcare system
• Healthcare Provider

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Framework for Symptom Management, Dodd et. al.
(2001) JAN, 33(5) 668-676
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Framework For Symptom Management

• Symptom Outcomes
• Functional Status
• Emotional Status
• Mortality
• MorbidityCo-morbidity
• Quality of Life
• Self Care
• Costs

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Discussion Points -Symptom Outcomes

• What is an Refractory Symptom?JOP
  12(3)40-45(1996)
• What is the symptom and how is it manifested?
• For whom is it difficult?
• What are the childs preferences and/or capacity
  to tolerate the symptom?
• What are the family or caregivers preferences
  and/or capacity to tolerate the perceived
  distress?
• Have various approaches and alternative trails
  been fully explored?

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Discussion Points - Symptom Experience/Management

• What is the most comfortable way to live and die?
• GJ tube/PICC Prolonged life with severe
  neurologic injury with multiple medical
  interventions and eventual death from secondary
  complications
• NG feeds Respiratory failure secondary to
  aspiration
• Withdrawal of fluid with sedation up to 2-3
  weeks of sedation, dehydration and eventual death

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Discussion Points Symptom Experience

• Moral Distress Is it ethically appropriate to
  treat or withdraw
• Sanctity of life
• Child should not be denied life-saving treatment
  because of any degree of mental of physical
  disability, nor because of the presence of
  overwhelming suffering
• Quality of life
• Life is not always better than death
• When life is felt to be worse than death, then
  death is the treatment of choice
• Social utility
• Refusal to allow the extreme needs of one patient
  to outweigh the competing needs of others
• Greatest good for the greatest number

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Discussion Points Symptom Experience/
Management

• Withdrawal of Fluids and Nutrition
• Few controlled studies
• Case reports
• Emerging consensus
• Seriously ill or dying patients experience little
  if any discomfort upon the withdrawal of tube
  feedings, TPN, or IV hydration

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Comfort Care for Terminally Ill Patients JAMA
27216. 1994

• Prospective case series in inpatient setting
• Determine frequency of symptoms of hunger, thirst
  and determine whether these symptoms could be
  palliated without forced feeding, forced
  hydration, or parental nutrition
• Adults with terminal illnesses
• 32 patients monitored over 12 month period
• 20 patients (60) never experienced any hunger,
  11 (34) experienced hunger only initially
• 20 patients (62) experienced no thirst or thirst
  only initially during their terminal illness
• In all patients symptoms of hunger, thirst, and
  dry mouth could be alleviated with small amounts
  of food, fluids and/or by application of ice
  chips and lubrication of lips
• Patients who are terminally ill did not
  experience hunger and those who did needed only
  small amounts of food for alleviation
• Food and fluid administration beyond the specific
  requests of patients may play a minimal role in
  providing comfort to terminally ill patients

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What Happened?

• Teams collaborated to provide effective symptom
  management and transition from active treatment
  to comfort care
• Provided pain control through subcutaneous
  butterfly (morphine and methadone)-responded by
  reduction in hypertonia and mom able to hold in
  arms for first time since admission to hospital
• Died comfortably (as per parent and healthcare
  provider report) 4 days after withdrawal of
  fluids and addition of round the clock sedation
  with family at bedside
• Debrief sessions with team members identified
  changes in practice needed Led by Palliative
  Care NP

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APN Role in Pediatric Palliative Care

• Who Does What?
• Concern that palliative care practitioners were
  only used as symptomatologists
• By definition palliative care aims to manage the
  physical, emotional and spiritual needs of
  patients facing life threatening illness and
  their families
• Pediatric APN is ideally positioned to support
  team and families through the complex dynamic of
  symptom experience, symptom management, and
  symptom outcomes

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Areas for Further Research

• The Palliative Care NP
• Critical elements that characterize APNs and make
  these nurses uniquely qualified for an expanded
  role within this area include
• In depth knowledge of a specific patient
  population
• Decision making capability
• Leadership skill
• Capacity to negotiate a complex integrated health
  network (Weggel,1997)
• APN Role
• Using the Sick Kids model the APN is well
  positioned to enhance and lead complex systems
  involved in the care of complex patients and
  their families

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Summary

• Symptom management must consider the whole
  patient and team
• Approach to care should be holistic and
  collaborative - Utilizing a model to guide your
  practice
• Comfort and understanding with end of life care
  requires experience and support from expert
  consultants ( such as a Palliative care team)
• APN can be leaders in this specialized area of
  care-managing symptoms, families and teams
  experience of those symptoms and outcomes of that
  experience